The Rare Brain Disease Ecosystem

Connecting the world for brain health and rare disease care

Why brain health matters

Despite progress, challenges persist for the 30 million individuals living with rare diseases in Europe. Notably, 70% of rare diseases start in childhood while 75% of rare diseases exhibit neurological symptoms, contributing to immense unmet needs.

0 M

people live with a rare disease in Europe.

0 %

of rare diseases start in childhood.

0 %

of rare diseases exhibit neurological symptoms.

Bridging Science, Policy, and Patient Needs

The Rare Brain Disease Ecosystem (RBDE) proposed by the European Brain Council (EBC) aims to address these enduring challenges by fostering innovation, reducing geographic and societal inequalities, and tackling emerging issues related to genomics, health data, and workforce capacity.

Building a United Brain Health Community

In line with EBC’s mission, it brings together multidisciplinary experts and stakeholders in the field, including researchers, clinicians, policymakers, patient organizations and industry representatives to identify gaps, and rethink priorities in Europe while aligning with ongoing initiatives. At the core of the Ecosystem lays a common mission for the community involved: delivering effective, equitable and sustainable solutions to facilitate the prevention, diagnosis, treatment and management of rare brain diseases, especially in areas where there is an unmet public health need.

Publications

Patient pathways for rare diseases in Europe

Ataxia as an example

The COVID-19 pandemic impact on continuity of care provision on rare brain diseases and on ataxias, dystonia and PKU

A scoping Review

The organizational dimension in rare and complex diseases care management

an application of RarERN Path© methodology in ataxias, dystonia and phenylketonuria

Bridging Gaps and achieving seamless, coordinated care

A joint value of treatment study on rare neurological and neurometabolic disorders in europe

Brain Community Joins Calls for a renewed eu action plan on rare diseases

Impact of specialist ataxia centres on health service resource utilisation and costs across Europe

A Cross-Sectional Survey

Related Projects

Poster Presentations

European Academy of Neurology Congress 2023:
The role of patient representatives in the optimization of Patient Care Pathways at European level: the Phenylketonuria experience

European Academy of Neurology Congress 2024:
Assessing the Digital Care Pathways Unmet Needs for Rare Brain Diseases.
The Case of Phenylketonuria

News & Events

EBC’s Statement on the World Health Assembly Resolution on Rare Diseases

In the context of the 78th World Health Assembly (WHA) being held in Geneva on 19–27 May 2025, the European Brain Council (EBC) fully supports the Resolution on Rare Diseases: ‘Rare Diseases: A Global Health Priority for Equity and Inclusion’. Spearheaded by Rare Diseases International and a broad coalition [...]

EBC’s statement on the public consultation regarding rare diseases by the European Parliament’s Committee on Public Health

On February 28, marking the 2025  Rare Disease Day, the European Parliament’s Public Health Committee (SANT) kicked off its survey on rare diseases. The purpose of this public consultation is to provide a basis for the forthcoming work of the Committee in bringing a better understanding of the challenges of persons [...]

Rare Disease Day 2025

Towards A Rare Brain Disease Ecosystem Rare Disease Day 2025 | 'More than you can imagine' The Rare Disease Day event 2025, organised by the European Brain Council (EBC), was held on February 20, 2025. The event gathered researchers, clinicians, policymakers, industry representatives and [...]

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Our Partners

These partners have been involved with the European Brain Council on projects in the rare brain disease ecosystem.